Sunday, April 27, 2008

Been a while since I’ve managed a post as I’m already sick of having cancer and thinking about it all the time! However there is news to share so here’s all the latest.

First good news: the results of my genetic test for the breast cancer BRCA-1 and BRCA-2 genes came back negative. This means I do not have a genetic predisposition for breast cancer (just bad luck, apparently) and reduces the chance of recurrence of my cancer in the future. It also means there is no reason that any of my female relatives need to be tested for it, at least not on my account. It’s a huge relief that I don’t have to worry about my two daughters having a higher chance of getting this in the future.

This test was the last piece of input needed to make the surgical decision. As I understand it, lumpectomy plus 6 weeks of radiation is equally effective as mastectomy in reducing the chance of future recurrence. And just removing the lump, now tiny, will be much much easier for me to recover from. Hooray! (Haven’t discussed it with my doctor yet so nothing’s final.)

Second good news: my port has settled in a bit and is no longer causing me pain in the neck and arm. I can still feel it when I think of it, and it’s tender to the touch – Sarah managed to whack it today which made me wince – but it doesn’t hurt if it’s just sitting there. It was successfully used to draw blood for the mandatory week-after-chemo sample, though I did go a bit faint at the time and wondered if getting a needle poke in the arm wasn’t a bit better than all the creams and needles and tubing and blood thinner and saline flushing required to get blood thru the port. Nonetheless I’m sticking with it, and it’s definitely better than an IV for the chemo infusion.

Third good news: I still have my hair, defying all early predictions that I’d be going bald within 2-3 weeks of starting chemo. Every day longer I keep my own hair is a good day!

Other goings on: I’ve managed to make one yoga class so far, less than I originally anticipated when I went on my leave of absence from work. I’m either tired, or have conflicting plans, or just don’t feel like exercising though I know I really should. I don’t know how anyone works a job while doing chemo, because I’m completely wiped out. It’s only the 3rd week after chemo that I really feel myself again, but I still don’t have energy to go to an office or solve the world’s ills. I’m mostly puttering around the house, catching up on my naps, TV, and your movie suggestions thanks to Netflix. Running errands like grocery shopping, going to the pharmacy, or taking kids to the doctor. Picking up Ethan from school and trying to make sure dinner happens for the family. Basically taking on the role of homemaker, and I’m amazed that I still don’t have enough hours in the day to get done all that I want to get done. Everything takes longer when I’m low energy.

I’ve also tried my first support group, run by the Wellness Community. That’s a national non-profit that runs a whole bunch of cancer programs free of charge. I’ve been looking for a support group with young parents like me but haven’t found one yet. The Wellness Community’s philosophy is that all support groups should be mixed, so the session I went to had a 70-something guy with stage 4 lung cancer and 6 months to live, and a grandmother with her 2nd bout of breast cancer which had spread to her lungs. My first reaction was that I couldn’t relate to these people whose issues are totally different from my own, but they were very nice and surprisingly cheerful and since they’d been down the cancer road a lot longer than me, had some good advice to pass on. So I’ll give it a few more tries and see if they keep growing on me.

People keep asking me how the kids are doing with all this. Ethan, at 5.5, is pretty aware. He likes me to read him the kids’ books on cancer, and seems to understand them well. He knows that I get chemotherapy, and when I tell him I’m too tired to do things, he’s good about leaving me alone for a bit. Martha, at 3, can answer the question “What disease does mommy have?” with “Cancer.” But she doesn’t really understand. Initially she asked me every few days if I was feeling better, probably assuming it was like a cold. Now I think she’s pretty much forgotten about it. Sarah, at 20 months, is of course clueless. All seem to be regressing lately. Ethan has been quicker to cry or break down when upset; Martha’s potty training has gone backwards; and Sarah is extremely clingy to me. Everyone wants mommy all the time, preferably exclusive of the other kids, but there’s less of me to go around as I’m either tired or don’t have the patience for their whining and neediness. So it’s hard on all of us. Colin steps up and takes the kids off my hands as much as he can, and then he’s exhausted too. I just keep thinking that a year from now the kids will all be a year older and that much easier, and I’ll be done with this treatment and growing back my fuzzy head again (I still anticipate going bald eventually). Please let the time fly…

Tomorrow is chemo #3. My longtime friend Jessica is here to visit now and doing an excellent job entertaining the kids with walks, books, swimming, and the Children’s Museum.

Wednesday, April 9, 2008

A few days after my 2nd infusion, I am as expected tired, nauseous, low energy, and in a bit of a drug fog (did I mention that Cisplatin is supposed to be about the worst of the chemo treatments?), so this won’t be a long post. I have great news to share – Chucky (the tumor, for my newer audience) has shrunk after my first treatment. Hooray! Using the unscientific measuring method of the doctor’s hands, the pre-treatment estimate was that Chucky was 3 x 4 cm. On Monday, she estimated it at 1.7 x 3 cm, a dramatic reduction in volume. This makes all the hassle and suffering worth while.

My new port worked great functionally, it was all numbed up thanks to the cream I applied before I left the house, so all I felt was a tiny pinch when it was accessed. It was quite comfortable and easy to use, actually. The downside to the port is that since it was placed, it has been bothering my neck, as its catheter goes from my chest, over the collar bone, and back into the heart. Right where it is located on the collar bone, it was getting tugged painfully every time I turn my neck, which is a lot. (Hello, ever try backing the car up or changing lanes with only a slight head gesture?) I’ve also had some unexplained tingling in my right arm. Last week I went in to have the port X-rayed again to see if there was any problem with it, but was told it was fine and my choices were to live with it or have it put in again, which would delay my chemo schedule. I opted for seeing if it would get better on its own, which it has somewhat, but I can still feel it all the time, just not as painful as before. I’m still hoping for gradual improvements.

A bit more good news, my hair hasn’t fallen out yet so this past weekend when I went out to the one fancy event of the year with Colin (fundraiser for our elementary school), I didn’t have to go in a wig. So except for not feeling well, things are going okay!

p.s. Thanks to everyone who’s been helping with meals, it’s been very nice.